An FFB Board Member’s Perspective on Her Experience with Acupuncture

A few weeks ago, the Foundation’s chief research officer, Dr. Steve Rose, authored a post about acupuncture that generated significant interest from readers at Eye on the Cure and on FFB’s Facebook page. The impetus for his post was a feasibility study at Johns Hopkins University, in which Dr. Ava Bittner, O.D., Ph.D., found that eight of 12 people treated with acupuncture had, as Dr. Bittner reported, “significant vision improvements in night vision, dark adaptation and/or visual field.”

These are early findings, and acupuncture deserves much more research in order to know whether it is an efficacious and useful treatment for retinitis pigmentosa. Based on some patient experiences, including mine, there could be potential benefits from acupuncture.

Although I did not participate in Dr. Bittner’s study this past August and September, I underwent a 10-session acupuncture protocol for retinitis pigmentosa. I have Usher syndrome 2 and was only seeing shadows. I went to John Hopkins for acupuncture administered by a licensed acupuncturist trained for this specific protocol. During the sessions, about 40 needles were placed on various parts of my body, including toes, calves, knees, stomach, hands, ear, neck and scalp. Six additional needles were placed around each eye, but none directly on my eyes. The wiring providing the micro current was attached to the needles around both eyes. Then I lay there listening to soft music for 30 minutes. Nothing was painful. The micro current just felt like a gentle massage.

When at home, sometime after the third session, I suddenly could see the sink against the white counter top in my kitchen. I asked myself, “Could I see this before?” I was uncertain, as, over the years, I had stopped trying to use my vision. As sessions passed, these types of occurrences happened over and over again.

I also noticed I had the ability to see more contrast, and I perceived that my night vision had improved. For the first time in years, while traveling in a car, I could see the red taillights of cars ahead of our car and the headlights of oncoming cars. This is my opinion, of course, but I became certain that this was no placebo effect when, also at night, I saw the signs on the highway as our car approached them. I could not see that the signs were green or read them. Finally, although I hadn’t been looking for them, I saw the glint from the glasses on my husband’s face.

Living in Washington, D.C., I rely on the Metro, which is a very dark place with low lights. I travel on it with my guide dog, Finnegan. One day, as I was getting ready to get on the escalator, I saw the red light at the base of the escalator letting me know to stop as the escalator was going in the wrong direction. I could also see the green lights, although they appeared more white, letting me know I was heading in the right direction. I have not been able to see these lights for at least four years.

I still cannot see faces, and I can see only the color red. However, when I set the table for dinner, I can now see the placemats, plates and napkins, although I cannot see the details. Another reason I don’t consider this a placebo effect is that people who know me have noticed slight improvements in my vision. It’s important to note that my results have not been measured.

The Foundation’s work is grounded in rigorous scientific study, and as a member of its board, I know FFB cannot endorse acupuncture treatments until more scientific evidence is available.

Because of my experience, however, I ask everyone to be open, and not judgmental, when it comes to acupuncture. Eventually, the science will speak out. Dr. Bittner will soon launch another study taking a much more detailed look at acupuncture’s effects on retinitis pigmentosa. This is what we need — the science, the data, to discover all we can about the acupuncture process. Will it keep the cellular function healthy until there is a treatment? That is what I am hoping.

My caution to anyone considering acupuncture is not to run off to just any acupuncturist. In November, Dr. Bittner’s study was published in the journal Clinical and Experimental Optometry. This is a very defined, specific protocol. The risk factors are low, but I do advise you to go over them with your licensed acupuncturist.

35 Responses to 'An FFB Board Member’s Perspective on Her Experience with Acupuncture'

I am very pleased to hear that Mrs. Shea had a positive response to the acupuncture protocol I created for this acupuncture study. Dr. Bittner and I are very much looking forward to gathering more information during our next study in 2014.

Acupuncture is certainly not a cure for RP, but it may be able to recover some lost vision for some and slow the progression for others. We have seen anecdotal evidence clinically over the last 16 years with over 600 RP/RCD/Usher’s cases.

We are very grateful to Dr. Steve Rose for writing about the work we are doing. We strongly agree with the FFB position that people with RP should not run out and get acupuncture treatment. Some may obtain a copy of the study and want their acupuncturists to administer this method of acupunture treatment without being trained. We do not recommend this course of action. Administering this protocol without the proper education/training may result in harm to the recipient.

Thanks again for Mrs. Shea for sharing her experience and supporting our work.

Since there is talk about accupuncture going on, has anyone heard of Dr. Wei Dong Yu out in Vancouver, Canada? There’s videos of him on youtube,and even BBB has given them a good rating. I was going to go there, but wasn’t sure. Would anyone happen to know about him?

Rosenfarb, you make it appear the Dr. Steve Rose PhD. supports your stated findings of cure with acupuncture. He does not. And in an attempt to discredit Dr. Rose’s (Chief Scientific Officer at the FFB) findings, a female member of the Board (Shea) was allowed to publish her unscientific article about the benefits of acupuncture. She pocesses Absolutely no Scientic Credentials, she stated that she read the Results published by Bittner Optometrist. IT will help everyone realize that if she did read the Study she had no background to interpret the scientific findings. In addition, she misquoted the Study. Hardly a person to speak the FFB scientific community.

I am an acupuncturist colleague of Andy Rosenfarb who also specializes in treating degenerative eye diseases. Most of my clients have macular degeneration but I have also treated cases of RP.
Andy is the “Guru” of RP and I am so thankful for his research in this area as it is truly ground breaking. He makes an important point that acupuncture is not a cure for this disease but it may be the best thing until there is. What we seek to do with acupuncture, and more specifically Chinese medicine (acupuncture, herbs, nutrition, bodywork, exercise) is assess and treat the whole person–physical and emotional). How are your emotions and stress affecting you and your eyes? Toxins? Foods? I often say that eye problems are not really eye problems, but rather a manifestation of the whole. Unless the whole person is assessed and treated, how can a comprehensive change be achieved?
I’m always disappointed when people dismiss acupuncture without first trying to understand it. It is a 3,000 year old and very literate medicine. It is no pseudo-placebo-science. I have had too many clinical experiences proving the opposite. Just ask my once-skeptical client who hadn’t driven since March, but was able to drive to his appointment last week. Or the lady who saw 4 lines lower on the eye chart in 5 days. Or the clients who have seen me periodically for 10 years and have better vision now than in 2003.
RP and Stargardt’s can be more challenging to treat than Mac degen due to their congenital nature. It takes commitment and persistence. If you have RP, consider a consultation with Andy. You don’t have to lose sight before there’s a cure!
Mats Sexton, L.Ac.

We appreciate our readers sharing their personal experiences and perspectives about acupuncture for retinitis pigmentosa. We look forward to following Dr. Bittner’s forthcoming research and gaining necessary additional clinical trial data around this approach.

I have been receiving inquiries from people with RP about acupunturist in various cities who can adminster mt RP acupuncture protocol. Currently, I have NOT trained anyone in the JHU acupunture research protocol, and we have not authorized anyone to adminster it clincally.

I will be training/certifying acupuncturists over the next year or so. The reason is that the acu-points listed in the research paper are not traditional acupunture points, we listed acupoints in closest proximity. We did not clarify the specific locations and needling methods in the study report. These are alternate locations that I have found which seem to better benefit vision for RP patients.

Acupuncturists interested in adminstering this protocol must learn these alternate acupoint locations in order to correctly adminster the protocol and get results.

Again, our research team does not recommend acupuncturists adminstering this without the proper training. We will let people know when are looking for participants for the next study in 2014.

Andy Rosenfarb claims he is a Doctor. Nothing could be farther from the truth. He paid for his Dr. of Naturopathy Degree from a Fraudulent online diploma mill Canyon College. The Idaho Board of Education order the College to Cease and Desist operation because of its fraudulent nature and all certificates, Diplomas and Degrees were fraudulent. He is only a massage therapist and a Acupuncturist. He has NEVER been licensed as a Doctor.

I’m sooo happy to hear that you are seeing improvements!!! I actually went to an ancupuncture centre in ocotober, where the doctor told me ancupuncture will help, i went to a few session, and had to stop because of fianncial issues, but will soon restart them again! Good luck with everything!

It is nice to read this post. Not much scientific Retinitis Pigmentosa research have been done regarding the effect of acupuncture on this condition. A University in Austria have done some though. An extract of the findings can be seen here.http://acunova.dk/1585-2/?lang=en

Was wondering if any more test groups were needed yet, I don’t have rp but am trying to keep in touch with the latest research for someone close to me. What would it take to get an acupuncturist in the Northern California area trained in this procedure?
Regards,
Tim KeithTim@leafandvine.com

Madhu, thank you for your message. Unfortunately, we can only speak about research for retinal degenerative diseases that affect the retina in the eye. Your doctors and other eye specialists will be best suited to answer your questions about what treatments are available for your own condition.

You may want to visit the website of the National Eye Institute (http://www.nei.nih.gov/) or reach out to someone at the institute – they may be able to point you in the correct direction on other resources or organizations who specialize in your condition.

I do train and certify acupunturists in this method to treat RP. If you know of an acupuncturists who may be interested, can have them contact me at acupunkk@aol.com. I currenty have acupuncturists trained in Australia, Israel and a few others around the US. Again, I recommend seeing someone who has this training or those acupunturists with a significant amount of experince in treating RP. Results should be evidnt within the forst 10 treatments.

As for the next step with research, we received a grant for the NIH to do a second (and larger) study starting in Spring 2014. If you would like to receive information and updates in our AcuVison Newsletter, feel free to sign up at http://www.acuvisiontherapy.com

Moira M. Shea, This is an orginization that “Scientifically” keeps the RP community informed. It has been a reliable source of information until you were allowed to post your “Testimonial”(Completely Unscientific) about Rosenfarb and Bittner Study. At J-H. You do a disservice to the RP community in general. It just shows that in quoting from Rosenfarb/Bittner Study, you never actually read it or did not understand the scientific implications. It was written up like a 8th grade science project. It did not use scientific methodology. It was not double Blind. I could go on, but suffice to say that your testimonial was an obvious attempt to undermine Dr. Rose’s Scientific look at Acupuncture. You were only given a voice by way of Board Membership, and not because of scientific knowledge base. -Jack,retired Anesthetist

I have a daughter with Stargardt and I was contacted with turkish Dr. Feratli, who declared that already treated by electro acupuncture many patiens with macula degenerations, including RP and Stargard Disease. He prove this treatment on his site:http://stargardtdisease.com/contact-information/
It’s a right of evryone to deside – to beleave him or not, but I would like to give my child a chance.
This question addressed to Dr. Andy Rosenfarb.
The time is going and for all the wourld is not enough doctors like you. What you think, can somebody else have results that you have or better?

We in the Retinitis Pigmentosa groups tend to look toward the FFB as the final word in scientific studies regarding RP. We constantly quote from the FFB. There is now a problem in one of the groups. It has to do with Rosenfarb and Moira Shea. The members are now starting to say that both of them have the approval of the FFB regarding Acupuncture and Retinitis Pigmentosa. Because they are allowed to publish here,
I have already vetted Rosenfarb who by the way is by no stretch of the imagination a Doctor. And, I have vetted Ms Shea. Who has no scientific/research or clinical back ground. She is allowed to undermine the very purpose of this group, funding the Scientific Research for the cure or treatment of RP. Please consider what I have said.

I personally had this acupuncture treatment with Rosenfarb for RP. I have to say and advise others to stay away .This treatment did not work one bit, DESPITE the fact I was told I had had mayor improvements in my vision. Yes I was DECEIVED. Please do not make the same mistake I made by trusting this man.

“What [Dr. David Colquhoun, PhD.] and I (Dr. Steven Novella, M.D.] have convincingly argued, in my opinion, is that after decades of research and more than 3000 trials, acupuncture researchers have failed to reject the null hypothesis, and any remaining possible specific effect from acupuncture is so tiny as to be clinically insignificant. In layman’s terms, ACUPUNCTURE DOES NOT WORK – FOR ANYTHING…
Acupuncture was essentially defunct in the West until President Nixon visited China in 1972. Its revival in the West was largely a result of a single anecdote promulgated by journalist James Reston in the New York Times5 after he had acupuncture in Beijing for postoperative pain in 1971. Despite his eminence as a political journalist, Reston had no scientific background and evidently did not appreciate the post hoc ergo propter hoc fallacy, or the idea of regression to the mean.
After Reston’s report, acupuncture quickly became popular in the West. Stories circulated that patients in China had open heart surgery using only acupuncture.6The Medical Research Council (UK) sent a delegation, which included Alan Hodgkin, to China in 1972 to investigate these claims, about which they were skeptical. The claims were repeated in 2006 in a British Broadcasting Corporation TV program, but Simon Singh (author of Fermat’s Last Theorem) discovered that the patient had been given a combination of 3 very powerful sedatives (Midazolam, Droperidol, and Fentanyl) and large volumes of local anesthetic injected into the chest. The acupuncture needles were purely cosmetic.”
[Note: I, Jack C. Crofoot, Jr., Anesthetist, used InnovarTM (Fentanyl + Droperidol) for several years, as a General Anesthetic for Major Surgery. Add Midazolam (Versed) you definitely have a very potent anesthetic with no memory for the event.] Therefore, the acupuncture is just added pretty poof and of no value.

Please, people, let your brain open to the scientific proof. It is there and you do not need to be deceived by Scam Artists and Charlatans.

Regular Contributors

Dr. Steve Rose

Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. Read More...

Ben Shaberman

As the Foundation's Director, Science Communica- tions, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. Read More...

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